Vivian’s story: From baby with a cleft lip to confident adult

Silvia Pereira was pregnant for the first time in 1986 when a routine ultrasound revealed that she was carrying a baby girl with a cleft lip. In her early twenties and newly emigrated from Honduras, Silvia decided to keep the condition a secret because she was unsure of how her family would react. “I didn’t even know what a cleft lip was; I didn’t care how she came out; I just wanted my baby.”

When baby Vivian arrived, her husband Dennis was in disbelief: “If you’ve never seen a cleft lip, it’s pretty shocking. I asked myself, what’s going on? Is this my fault, is it my genes?”

Twenty-eight years later, Vivian reflects on her birth story: “Luck was never on my side. My first obstacle in life was being born.”

Vivian before surgery for cleft lip

The Pereiras were devastated when doctors said they couldn’t operate on Vivian for 10-12 years. “I thought, I’m the father, I should be able to fix this,” says Dennis. “But I couldn’t. I felt so powerless. I just wanted a miracle.” Then the couple was referred to Dr. John Mulliken of Boston Children’s Department of Plastic and Oral Surgery, who assured them he could operate on Vivian as soon as she gained another pound.

Silvia remembers, “He asked me, ‘Why are you crying? It’s just a cleft lip, not the palate. Your baby will be fine.’ He is an angel. We love him so much.”

As a baby, Vivian underwent two operations to close her cleft lip, plus other procedures to revise her lip and nose. Later, Dr. Mulliken collaborated with Dentist-in-Chief Dr. Stephen Shusterman and Oral Surgeon-in-Chief Dr. Bonnie Padwa to close a small opening in Vivian’s gum using a bone graft from her hip.

Vivian was too young to recall much of what she went through. But she does remember Dr. Mulliken always had coloring pages from her favorite movie, “The Little Mermaid.” She remembers him taking her to visit “the bubble gum oxygen lady to take a nap,” which was code for getting anesthesia before surgery. And she remembers the nurses who held her hands and offered to pray with her.

“I don’t know my life without surgery. It’s not a sad thing because we’ve been around so many amazing doctors and people who care about us. Boston Children’s has been our second home.”

Vivian discovers a myxoma

At age 12, when the cleft lip was almost behind her (she was finishing up laser treatments to diminish the scar), Vivian noticed a lump in her right cheek. A biopsy revealed a myxoma or benign tumor. Every year since that diagnosis sixteen years ago, Vivian has had annual operations to remove as much of the tumor as possible, but it continues to grow from tiny, microscopic remnants.

Vivian says the myxoma is harder for her to accept than the cleft lip because nobody knows when it will go away or if it ever will. But she goes on with her life and stays positive, graduating from Suffolk University, getting a good job and maintaining an active social life. She attributes her strength to Dr. Mulliken, her faith and her parents, who have always encouraged her to consider herself lucky. “My parents say, ‘Think of this as a blessing. There are so many kids who are worse off than you.’ They’ve never limited me; they’ve let me fly. My life’s goal is to repay them for everything they’ve done for me.”

But Vivian’s parents don’t need to be repaid. They get great satisfaction from their daughter’s self-confidence and accomplishments. Silvia gushes, “Vivian is a tough lady. She will never give up on anything. Her life hasn’t been easy and even though she had a cleft lip, she was never embarrassed and never hid it. She is always very open, strong and friendly.”

Dennis adds, “One of my fears when Vivian was growing up was that people would make fun of her appearance. But she has always been an A student. She has an awesome voice, and her take-charge personality is overwhelming. People see her qualities more than her physical appearance. We are so proud of that.”

Connecting with babies with cleft lips

Now when Vivian goes in to Boston Children’s for checkups, she feels a deep connection with babies with cleft lips she sees in the waiting room.

“The parents don’t believe that I had a cleft lip. I pull up pictures on my phone and say, ‘I was your baby.’”

“I’ve seen parents trying to face the stroller toward the wall to hide their babies,” says Dennis. “I relate to that. It makes me feel good inside to start conversations with them and say, ‘Don’t worry, you’re in the right place.’ I tell Vivian we should just go to Dr. Mulliken’s office and wait for new families to come in so we can tell them, ‘Trust us, everything is going to be OK. We’re living proof.’”